Additional information:

Disclaimer

The Commonwealth of Australia accepts no responsibility for the accuracy or completeness of any material contained in this report. Additionally, the Commonwealth disclaims all liability to any person in respect of anything, and the consequences of anything, done or omitted to be done by any such person in reliance, whether wholly or partially, upon any information contained in this report.

Any views and recommendations of third parties contained in this report do not necessarily reflect the views of the Commonwealth, or indicate a commitment to a particular course of action.

The analysis presented in this report reflects the submissions received by the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) in response to the National Disability Strategy consultation process.

All direct quotes in this report are excerpts from submissions and material obtained during the consultation process.

The submissions contain the ideas and thoughts of those who chose, or who were able, to provide a submission, and there may be other individuals, groups or government bodies that did not respond but may have other ideas or experiences.

The guidelines for submissions as set out in the consultation discussion paper were broad, which permitted discussion of a wide range of ideas, issues and solutions. But the absence of an issue or idea in a submission does not indicate that the issue is not important to the submitter, only that they did not choose to write about it.

This report should not be read in isolation, nor will it be the only source of data to inform the development of the National Disability Strategy. Rather, the report is a useful way of bringing together the voices of those people with disabilities, their families, friends and carers and the organisations that support them who provided submissions and participated in consultations. By identifying and discussing the issues in this way, new ideas and solutions may be discovered. This information, in conjunction with other evidence and data, will inform the development of the National Disability Strategy.

This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced by any process without prior written permission from the Commonwealth available from the Commonwealth Copyright Administration, Attorney-General’s Department. Requests and inquiries concerning reproduction and rights should be addressed to the Commonwealth Copyright Administration, Attorney-General’s, Robert Garran Offices, National Circuit, Canberra ACT 2600 or posted at http://www.ag.gov.au/cca

Acknowledgements

This Easy English version is based on the report, Shut Out: The Experience of People with Disabilities and their Families in Australia, National Disability Strategy Consultation Report, prepared by the National People with Disabilities and Carer Council.

Thank you for your ideas

We want to make life better for people with disabilities. This is why we are writing the National Disability Strategy. The National Disability Strategy is a plan for the future.

Last year, we asked for your ideas about how we can do things better. We received many submissions. There were more than 750 written submissions. We also held public meetings around Australia. These meetings were known as consultations. A total of 2,500 people came to these meetings.

We now have a better understanding of how people with disabilities are struggling in their daily lives. We know that you do not want special treatment. What you want is to have the same opportunities as everyone else in the community.

Thank you for telling us about your lives. We will use your ideas to write the National Disability Strategy. The Strategy will be ready in 2010. Together, we can work to improve the lives of people with disabilities.

The Hon Jenny Macklin MP

Minister for Families, Housing, Community Services and Indigenous Affairs

Dr Rhonda Galbally AO

What the submissions said

Half of the submissions we received were from individual people.

The other half were from groups who work with people with disabilities.
There is a list of these groups at the end of this document.

In parts of this document, we have included the exact words that people used to tell us their ideas. We have not written their ideas in an easy to read way. This is because we want you to know exactly what they said.

Sometimes when we talk about a person, we do not use their full name. Instead, we just used the first letter of their name. We have done this because some people may not like to have their name printed in a document like this one.

Some of the stories are sad. Others show a lot of courage and the desire to live a better life.

Until the concept of disability disappears and is replaced by a society that is structured to support everyone’s life relatedness and contribution—until that day my life and opportunities and the lives of every other person who carries the label ‘disabled’ depends on the goodwill of people in the human service system. Goodwill is no substitute for freedom.

The submissions told us that for people with disabilities, life is difficult. Some of the things people find difficult include:

Feeling left out and excluded. It is hard to be seen and heard within the community. Sometimes this is because of discrimination.

Being part of the community

People with a disability want to live in a society where they are treated with respect, dignity and importantly with equality, and not as ‘poor things’ nor merely as recipients of services. Additionally they do not want to be segregated as ‘people with disabilities’.

Many people with disabilities find that it is difficult to be seen or heard within the community.

More than half of the submissions we received told us that this was a problem.

People told us that they feel:

Invisible

Afraid

Left out or excluded

Isolated and alone

Patronised.

Some people told us that they experience abuse

People living with disabilities also experience discrimination.

These things happen a lot of the time. Sometimes they happen every day. And they happen in many areas of life, including:

Government

Business

community groups

Education

Employment

Health care

Housing.

If I lived in a society where being in a wheelchair was no more remarkable than wearing glasses, and if the community was completely accepting and accessible, my disability would be an inconvenience and not much more than that. It is society which handicaps me, far more seriously and completely than the fact that I have Spina Bifida.

The submissions told us that feeling left out makes a difference in all areas of life.

Some things that can be difficult include:

Using the service system

Using transport

Getting in and out of buildings

Getting an education

Working

Going out and having fun.

In this day and age, imagine if a person was told that they could only go to ten cinemas in Australia and to one of three sessions a week because of their gender, cultural background or religious beliefs. But as a deaf person, that is what I face. I am very limited in where I can go and when, to access things that other people take for granted.

Being separate

Some people think that having separate services for people with disabilities can make discrimination worse.

Many of the submissions talked about the experience of being separated from the rest of the community. Here are some examples:

A Neighbourhood House that only offered separate programs for people with disabilities

A child who was not allowed to join a local kindergarten

A young man with autism who could not find a school to go to

A woman who had to have a check up on the kitchen table at her doctor’s office because the standard equipment was not right for her.

The gym offered a separate class for kids with disabilities. I asked one of the teachers whether it would be possible for my daughter to attend one of the other mainstream classes. She frowned and looked concerned, and said that was why they had created the separate class. I said she was perfectly capable of joining in with the other girls. She said ‘Well that’s OK for your daughter but if we let her in we will have to let everyone else in’. These are not elite gymnasts. They are little girls jumping around in leotards having fun on a Saturday morning.

These kinds of things make people angry.

Some people said that they are not angry about having a disability — they can live with that. What they are angry about is other people’s attitudes.

Or, people told us that they are angry about the problems they face when they try to do everyday things.

People living with disabilities want to do things that are easy for other people, like being able to go to the library or the movies.

I do not expect to get access to the Pyramids or Uluru but I do want to get into all of the library and all of the community centre.

Change is needed

Virtually every Australian with a disability encounters human rights violations at some point in their lives and very many experience it every day of their lives.

If things are going to get better, everyone in the community needs to change the way they think and act. There is an important document called the United Nations Convention on the Rights of Persons with Disabilities. This document was written to improve the way people with disabilities are treated in every part of the world.

In Australia, we also have laws against discrimination. However, some people still act in a bad way. And sometimes it’s hard to prove that discrimination took place. Many of the submissions asked for things to change in this area.

Persons with disability are subject to multiple and aggravated forms of human rights violations, including the neglect of their most basic survival related needs. These human rights violations do not only occur in far off places that lack enlightened legislation and policies, or the resources needed to meet basic needs. They occur every day, in every region, of every state and territory in Australia. Virtually every Australian with disability encounters human rights violations at some points in their lives, and very many experience it every day of their lives.

In 2009, in one of the most enlightened and wealthiest nations in the world, it is possible for persons with disability to die of starvation in specialist disability services, to have life-sustaining medical treatments denied or withdrawn in health services, to be raped or assaulted without any reasonable prospect of these crimes being detected, investigated or prosecuted by the legal system, and to have their children removed by child protection authorities on the prejudiced assumption that disability simply equates with incompetent parenting.

Ideas for making things better

Here are some of the ideas people had for making things better in the community:

Taking more action to make sure that discrimination does not occur

Making sure the government thinks about inclusion when creating laws and policies

Giving people with disabilities more opportunities to take part in creating laws and policies

Realising that services for people with disabilities don’t always have to be separate

The service system

More often than not, people with disabilities are seen as recipients of services and a burden rather than equal members of the community.

A lot of the submissions were about the disability service system.

The service system includes different places or groups that offer help to people with disabilities. These places might be:

Part of the government

Private businesses

Non-profit groups.

Many people told us that they were frustrated and angry with the service system.

A lot of people want changes to be made.

The service system is supposed to help people with disabilities. More than half of the submissions said that instead of helping, the system actually creates problems.

Problems with the service system

Here are some of the things people said about the service system:

The system is broken.

There is not enough money for the system to work properly.

The money in the system is not spent well.

The system is not able to help everyone who needs help.

The system needs to be changed completely, not just given a ‘quick fix’.

Sometimes the way the system works only suits the system. It doesn’t suit the needs of people with disabilities.

They seem to spend more money on case managers than actual therapists.

The focus of the strategy needs to be on the individual with the disability with the aim of optimising their quality of life, not creating structures and barriers between levels of government, artificial eligibility criteria or categorising people based on a ‘one-size-fits-all’ model.

People working in the system

It is not unusual for people to be left to sleep in their wheelchairs through lack of care hours to get them to bed, or for them to be left without a meal as there is no-one who can prepare it for them.

Here is what the submissions said about the people working in the service system:

There are not enough people working in the system.

The people working in the system are constantly dealing with problems so they don’t have time to make the system better.

The staff themselves feel frustrated by the system.

Sometimes the people working in the system discriminate against people with disabilities.

How do I find an honest, willing carer who will be willing to work for a low wage? You find lazy, dishonest carers everywhere! They take money and cigarettes. One carer I had left leaving me thousands in debt. This man brought his daughter to my home and expected me to feed her. He stole toilet paper, then he just packed up one night and left. They’ve got you over a barrel because you’re at their mercy, and they know it! Finding good carers is very difficult.

Types of services

Here are some of the things people said about the types of services:

There is not enoughchoice in the types of services available.

There is not enough flexibility in the way people can use the services.

Some of the services cost too much.

Accessing the services can take a long time.

Sometimes the information about the services is difficult to understand.

The services are not the same in all parts of Australia.

Another problem with state funding is that a person with a disability can’t move from one state to another without experiencing great difficulties. Our son would like to move north but because he is funded by another state this is almost impossible. We approached the authorities and were told that he could apply but would not be considered until he actually lived in the specific state. Even though his funding would be transferred across to his new state, it only lasts one year and then reassessment would occur, leaving us wondering what that would lead to, all in all it is far too difficult and risky for him to move.

Eligibility

There are a lot of rules about who can use the different services. Some of the submissions said that people were concerned about being eligible for services.

T is 40 years old and has been receiving the Disability Support Pension since he was 18 years old. He went to a regular school but felt he never really fitted in.

T has lived all of his life with his mother who is now 80 years old. T’s mother is suffering from early dementia and this is resulting in friction between T and his mother.

T has been attending a centre for intellectual and development disability. A doctor from the centre reported that a recent WAIS 111 [assessment] showed that T had a full scale of IQ of 72 but his subscales show considerable variation with impaired function in picture arrangement and completion, similarities and coding and relative decrease in his comprehension. The doctor says T has an inadequate skill base for activities of daily living such as shopping, cooking, tying his shoe laces and self-care, as well as problem-solving and decision-making. He also states he has an anxiety disorder. T’s situation at home with his mother is very unsatisfactory resulting in T having violent verbal outbursts and he fears for his mother’s safety because he gets so angry he has trouble controlling himself. The doctor believes that if T does not get support to move from his mother’s home, a more acute situation will arise requiring much more extensive support. To access disability support services three diagnostic criteria must be met in order to verify a diagnosis of intellectual disability, including IQ assessed as being below 70; limitations in adaptive functioning; and onset before 18 years old. The disability support service in T’s area argued that as T went to a regular school, as he has been employed as a cleaner with the support of an employment service, and as he has a driver’s licence and an IQ of over 70, he does not qualify for support under the service’s criteria. Such eligibility requirements exclude people with IQs higher than 70 who have an impaired function or skill base for daily living (e.g. shopping, cooking, etc.). This population group are overrepresented in the criminal justice system both as victims and offenders.

Some people, like T in the example above, felt that they missed out on services even though they really needed them.

People said that they have to do a lot to prove that they are eligible for services. This can make them feel bad about themselves.

Some people feel afraid that services may be taken away.

Disability support recipients live lives of fear and desperation. Sooner or later every disability support recipient I know has confessed to the concern they feel over the ‘what if’ factor— what if government stops paying social security/disability support?

Ideas for making things better

A commitment from all governments to the provision of essential services for people no matter how they acquired their disability is essential. It is only with this basic commitment … that we can make any substantial progress.

Some of the ideas people had for making the service system better were:

Making the system simpler

Making sure that all people with disabilities can use the system

Looking after the needs of the person instead of the needs of the system. This is called ‘person-centred care’

Having one place to access information about all the services that are available

Having ways to check that the system is working properly

Training more people with disabilities to work in the system.

Many people liked the idea of being able to manage their own money.

They felt that this would allow them to buy services themselves without having to use the system every time.

Here are some examples:

Overwhelmingly people with disabilities and families say that they want to directly receive government funding so they can purchase their own services. This will provide people with greater control over supports, give them more flexibility, and would contribute to improved quality of service. Overall, this would allow people with disabilities to have wider choice and live with greater dignity.

For the last 11 years I have been receiving a support and choice package through government funding. Receiving this has enabled me to live independently and continue working. For a number of years I had discussions with the State Government department about managing my own package as I was already doing this informally. In 2008 I was approached by the Department of Human Services to apply to become part of a two year trial of managing my own package. My application was accepted and my involvement in this trial began in February 2009.

Managing my own package has given me the flexibility to alter the assistance l need as my circumstances change. I have also found it to be quite empowering to know I am able to buy services from other agencies when, and if, the need arises. I am extremely conscious of creating a life for myself so that I am not reliant on family and friends. I want to keep them just as that—family and friends—not as carers.

Aids and equipment

Many people with disabilities need aids and equipment to help them live their lives.

Some people find it difficult to get the aids and equipment they need.

There is much talk of community involvement and participation, but when individuals don’t have access to the necessary mobility and communication tools to partake, then it is not possible.

In some other countries, there are laws that mean people with disabilities can get the aids and equipment they need.

We don’t have these laws in Australia.

One of the biggest problems that people face is waiting a long time to get the equipment they need.

Sometimes, people give up waiting and buy the equipment themselves. And sometimes, the equipment is not right for the person.

Why does my daughter have a communication device that talks in a male American computerised voice? Why can’t she have a communication device that has a voice of a young Australian girl?

Ideas for making things better

There were lots of ideas for making things better.

At the moment, there are many different ways to get aids and equipment. And there are different ways to get things in different parts of Australia. Some people thought that the way to get aids and equipment should be the same in every part of Australia. This would make things simpler.

Some people thought that getting the money to buy aids and equipment could be easier.

For some people, new types of equipment can make their lives a lot better. Getting the latest equipment could be made easier.

Getting into buildings

Over time, big improvements have been made to many of the buildings in Australia.

However, there are still some places in the communitythat people with disabilities can’t get into.

These include:

Shops

Cafes

Swimming pools

Public buildings

Libraries

Sports venues

Cinemas.

Not being able to get into these places makes it really difficult to be part of the community.

We want to contribute to Australian society but we usually find that we can’t access the workplace, can’t access public venues, can’t have a holiday because there is no suitable accommodation.

Many professional services [such as dentists] are based on secondary levels with stair access only. Many cafes have step entry. My family or carer and I are forced to utilise outdoor street seating which on many occasions is the colder or less desirable alternative. Cinemas and swimming facilities are still often inaccessible. This prevents me from participating in these recreational activities with family and friends.

Sometimes it is possible to get into a building. But once you get inside, there might be other problems. Here are some of the problems people told us about:

Bathrooms that are too small or difficult to use

No signs in Braille

Uneven surfaces

Reflective surfaces

Narrow doorways

No easy-to-read signs.

Changing buildings can take a long time. Sometimes, it’s not easy to make changes.

Ideas for making things better

Some of the ideas people had for making buildings better were:

The law should be changed so that all new buildings must be accessible.

Housing

In the past, many people with disabilities lived in special buildings called institutions. These buildings were separated from the rest of the community. Today, things are different. People with disabilities live in many different types of houses. However, things are still not perfect.

Here are some of the problems people told us about:

There is not enough choice about where you can live.

Some people do not want to live with other people. Others do not like the people they have to live with.

Some people have to live in places that are not right for them. For example, some people are too young to live in a nursing home.

There is a long waiting time to get housing.

Some people experience abuse in the place where they live.

There is not enough help available to find the right housing.

It is reasonable to argue that very few people living in group homes would choose to live in such a setting if they had a realistic choice. It is a compromise brought about by necessity, as they do not have enough support through funding for paid support, even augmented by their family and informal support networks, to live in their own home… The concept of community living for people with intellectual disability is a much richer concept than a mere physical presence in a community setting, which by itself does not guarantee community integration and inclusion. As support workers often work alone, there remains significant risk of abuse and neglect.

A woman with a physical disability was forced to move into a group home with two men with autism when her family was no longer able to support her.

The woman feared for her safety as she had no way of defending herself when she was hit by one of the men …

A mother complained that her son was being repeatedly sexually assaulted by a resident of his group home. The service was not able to move the other man to alternate accommodation because none existed.

Many people with disabilities would like to have more choice about:

Where they live

Who they live with.

The [Home and Community Care program] guidelines are based on the income of the person who shares your home with you. I had to get rid of my housemates in order to get extra HACC assistance. I had male housemates and I was told they were expected to help care for me, e.g. food, cleaning, shopping, everything! But none of these people were my partner, they were just housemates, and they were male—how could I expect them to help me shower or go to the toilet? So I was forced into sole living because of the HACC guidelines.

Parents of adults with disabilities

Many parents would like to see their adult son or daughter with disabilities move out of the family home. But in many cases, there is nowhere for them to live.

This can be a big problem as the parents get older.

Our daughter is 18. She has a severe intellectual disability and is fully dependent on us for all her needs. [She] displays challenging behaviours, which makes daily activities within the family very demanding. [She] presently attends school and accesses respite two nights per week during school weeks. This arrangement will cease at the end of 2008 as [she] will be leaving the educational system. We understand there will be no supported accommodation made available to us in the future. Our greatest concern for the future is that due to our daughter’s high support needs we will be unable to continue in our present work situation.

It would appear that the government thinks that once disabled children turn 18, they all of a sudden find independence and need less support. Well, let me tell you they are still the same people they were when they were children, they need care 24/7, they won’t get a job and they cannot look after themselves until Mum and Dad get home from work. This will not change for the rest of their lives, this is reality. We care for our children and want to continue to do so, but cannot do it without support from the government. Do we have to hit crisis point before you will listen?

Some of the carers are in their late 80s or 90s and have terminal illness. Many or almost all of the carers do not have other family members to care for their son or daughter which means they need to be placed in supported accommodation … [P]lacements are governed by the Department who operate a panel for eligibility. This is decided on a priority basis. This process usually means persons have little choice in accommodation [when] their parents are critically ill or have [died]. All of the carers would like to be part of the process of transitioning their son or daughter in care. I have witnessed intense worry for the carers and the care recipient waiting for an appropriate placement. Many will not live to see this. I see this as a priority as there is currently no choice for a person with a disability and entry into supported accommodation is largely crisis driven, causing carers and care recipients undue suffering.

Governments rely on most parents never being able to bring themselves to abandon their children. Deep parental love and a sense of duty are being deliberately exploited solely in order to save money, which in a country as wealthy as Australia, is profoundly shocking. But even the most devoted and self sacrificing of parents can’t keep on caring if they’re dead.

Ideas for making things better

Here are some of the ideas people had for making housing better:

Make more houses available

Create better types of housing for people with disabilities

Check to make sure that people are OK in the place where they are living.

Transport

Many people told us about the difficulties they had using transport.

A lack of transport means that people with disabilities have difficulty being part of the community.

The cost of transport or the lack of availability of transport often means that people with disability cannot access education, employment services or the community. It is a pivotal support service which is often not available which then excludes the person from many or all aspects of their community.

There is a policy called the Disability Standards for Accessible Public Transport.

This policy allows 30 years for public transport to be made better for people with disabilities.

Many people said that this is too long. They do not think that people with disabilities should have to wait so long to get better public transport.

There would be community outrage if we said that we won’t allow people onto all of our public transport for the next 25 years because of their cultural background, gender or religious beliefs. Or, that these people can only travel on 50 per cent of our buses in Australia up to 2012. There would be a national and international outburst of rage and non-acceptance if either of these two proposals were made. Yet this is exactly what is contained in regulatory legislation in Australia today. People in wheelchairs continue to have to wait at bus stops, in all types of weather, while others get onto the bus because, on average, every second bus in Australia is not accessible. This continues to happen every day in all capital cities around Australia and thousands of Australians with disabilities have no other option but to wait for the next bus and just hope that it will be accessible. Where is the community outrage?

Taxis

Many people with disabilities use taxis to get around.

Some people receive vouchers to help them pay for using taxis. But sometimes, vouchers still don’t make it easy to afford taxis.

Although many individuals are provided with access cab vouchers, the limited number of vouchers means that clients must limit travel or alternately have to pay significant transport costs.

The transport system as it now stands is very stressful. The biggest issue I have is not being allowed to use my tertiary vouchers at any other time other than lectures. It means I have to stay at home struggling with my assignments on my own. I need to be able to move around Uni on other days within the confines of my courses to achieve the best result. I need the support from other students and to be able to bounce ideas off them—to be part of a team. These restrictions cause isolation, low self-esteem and one is made to feel that we are different.

Sometimes taxis are not available. Sometimes taxis take a long time to arrive.

Sometimes taxi drivers or other transport workers do not have the right kind of experience to help people with a physical disability.

Other types of transport

Many people ask their family or friends to help them get around. Some people said that it is harder to get around in country areas.

Other people said that it is hard to travel on aeroplanes. This is because, if you have a carer, you have to pay for 2 tickets – 1 for yourself and 1 for your carer.

Ideas for making things better

Here are some of the ideas people had for making transport better:

Make transport easier to use

Make transport cheaper

Make more taxis available

Improve the skills of people working in transport, such as taxi drivers and train drivers.

Some of these people need to learn more about helping people with disabilities.

Health care

Born with motor neurone disease, D’s mother did everything for her for her whole life. Although she was capable, she had never even washed her own hair until after her mother died when she was 32.

After the initial shock, and being nearly forced to live in a nursing home, five years later D was living independently on her own. She had started a social group for young people in nursing homes.

We were about to have a housewarming party to celebrate this massive achievement of living on her own when D became ill. No one thought that she should have yearly health checks and she developed kidney stones. With her disability she couldn’t feel anything from her stomach down and so didn’t get the warning signs that people who can feel do.

One night on her own she rang the after hours care to tell them she needed help and would they send someone to help take her to hospital. The After Hours Disability Service determined over the phone that she was not sick enough to warrant a visit. D then had to ring the ambulance herself, on her own she went to hospital distressed.

She was sent to intensive care and put into a medically induced coma. Five months later she passed away. She never went back to her home to live.

She was let down on so many levels.

The submissions said that many people with disabilities experience problems with health care.
Some people said that the poor health care means people with disabilities live shorter lives than other Australians.

The submissions said that many health care workers are not well trained in how to look after people with disabilities.

This includes all types of health care workers, such as:

Doctors

Nurses

Specialists

Pharmacists

community health care workers

Other health professionals.

Sometimes, people with disabilities may experience discrimination while receiving health care.

Caring for children

Many parents use special health care services for a child with disabilities.
It is a good idea to use these services when a child is young. This is called ‘early intervention’.

Many parents said that they do not have enough access to early intervention services.

Ideas for making things better

Here are some of the ideas people had about making health care better:

Education

In Australia, we think that getting an education is a very important part of life. But for many people with disabilities, getting an education can be difficult.

I remember my Year 8 science teacher said she couldn’t wear my Microphone because it put holes in her clothes. I couldn’t do anything about it … she was the teacher—I was the student. For the record—I failed Year 8 science—and it had nothing to do with my ability because in Year 9 science, I had a teacher who wore the Mic and I topped the class.

Some of the submissions said that getting an education is difficult because:

Parents and students do not have enough choice.

Schools find it hard to meet the needs of individual people.

There are not enough teachers or aides to help in the classroom.

Teachers are often not trained in working with students with disabilities.

There is not enough help available for children to go to their local school. Many people have to travel to a special school to get the help they need.

There is not enough flexibility. For example, one school would not hire a bus with wheelchair access. This meant that the child had to miss out on excursions.

As a classroom teacher I enjoy having students with a disability in my mainstream classroom as I see them as children first. However, it is extremely frustrating and discouraging to see a child needing a particular intervention or program and being unable to provide it properly because there is no one there to give the child the extra support they need.

I meet parents who are eternally frustrated and upset by the barriers that their child faces such as their teacher is not trained in how to educate their child who is non verbal or has never worked with a child with a disability.

Whilst government policy talks about the choice of regular class, support class or special school, students with a significant disability are usually forced to attend a special school even where inclusion is the expressed wish of the parent.

Problems for school leavers

Many parents found that there were a lot of problems when their child turned 16 or was ready to leave school.

Because she is now sixteen I have had the disability allowance discontinued even though she is still at school for another two years! She is unable to take out private health insurance because she is too young … but she doesn’t meet the criteria for a pension.

Because he was over 16 the Child Disability Allowance was stopped. J was an ‘adult’ for Centrelink and employment purposes, a ‘child’ by law and for private health insurance—the list goes on. J can work over 15 hours per week— so no Disability Pension; no Youth Allowance because his parents’ combined income was over the ‘magic’ number. He had to fight lots of red tape to receive the Mobility Allowance, his only source of income for a very long time. This was a very traumatic time for J as he wanted to become independent and at least work part time ‘like the others’. It would have been better if J had automatically received either the Disability Pension or Youth Allowance/Mobility Allowance and access to services immediately from leaving Year 12.

Ideas for making things better

Some of the ideas for making education better were:

Many people said that more money was needed to improve education for people with disabilities. People want more flexibility with the money that is available. Sometimes, people want to do things in their own way.

People also said that more training for teachers was needed.

People want the standard of education to be better.

Parents and students want more choice about which school they can go to.

Students would like more help when they finish school. Some people would like to continue their education at university. Others want to get a job.

Employment

The submissions told us that people with disabilities want to work. What you need are more opportunities to work.

The areas you need help in are:

Looking for jobs

Getting a job

Keeping a job.

B is a 45-year-old woman. Several years ago she was diagnosed with Type 2 diabetes, and this has now led to the loss of most of her vision. She lost her job last year after her employer refused to provide workplace adjustments or give her time off to learn how to use assistive technology. She is now finding it harder and harder to cope, and is stressed and anxious most of the time because she can’t get accurate and consistent information about the social security benefits she is eligible to receive as an unemployed person. Most of the printed information is inaccessible to her, and she can’t fill in the forms independently.

Employers

People told us that the biggest problem they faced was the bad attitudes of employers.

Sometimes these attitudes included discrimination.

I definitely made the correct decision when diagnosed about five years ago to limit the people and work colleagues who knew of my situation to a small number. Once the full extent of my situation became ‘public’ to work managers and HR, the barriers began to build. This took the form of well meaning but restrictive measures under the guise of ‘duty of care’. Freedom of movement including no longer being allowed to drive a work vehicle meant the loss of a portion of my independence, even though there were no restrictions on my driving outside of work. The psychological impact was that for the first time I started to feel like a disabled person rather than a person with a disability. Believe me, they are two very different feelings.

I have had bosses in the past who don’t understand that I need an interpreter and they go ahead without one. It really puts me in a difficult situation to try to keep up with what is being said. Usually I end up just sitting there and can’t say anything, and don’t really follow. It makes me feel embarrassed and angry.

Many employers think it is too difficult to employ people with disabilities.

Employers also think it will cost a lot to make the workplace accessible. But this is not always the case.

An organisation was looking for an administrative officer. One of the requirements of the position was the transcription of lengthy taped material. For a long time the organisation had been unable to find a cost effective method of transcription—the employer commented that it had become a lost art. Through an organisation specialising in assisting people with a disability to find employment, the employer located a young woman with a vision impairment who had the right set of skills. The only workplace modification required was the installation of a computer program to verbalise word documents and a dual headset to enable her to listen to the tapes. Productivity in the area increased considerably after the young woman joined the administrative team. The employer was delighted with the change and commented that ‘by investing in the right person you will reap the benefits’.

Earning money

People with disabilities get less work than people without disabilities. This means that they earn less money. Instead, many people with disabilities get money from income support.

The submissions told us that you want to:

Use your skills and knowledge

Contribute to the community

Earn your own money

Be independent

These things can be achieved. Here is an example:

Injuries sustained in a serious car accident left one woman unable to continue in her current occupation. Searching for alternative employment, she applied for job after job, but was never offered an interview. Determined to be fair and honest, she disclosed her medical history in her applications. She believes her decision to be frank was behind her constant rejections. She finally responded to a position within the Australian Public Service and was successful. The flexible working arrangements offered to all employees allowed her to keep her medical appointments without requiring additional leave. After constant rejection, she was delighted to find a workplace committed to being more inclusive.

Ideas for making things better

Here are some of the ideas people had about making employment better:

Creating more jobs for people with disabilities. Creating more jobs in the disability service system would be a great place to start. More people with disabilities could be employed in all areas of government

Making friends

Many people with disabilities feel lonely. Sometimes, it’s hard to make friends in the community. This might be because you have trouble getting around. Or sometimes it is because of the way other people in the community treat you. It is difficult to change the way that other people think or act.

Over the last several years D has made many friendships with other young adults. Their friendships have developed into boyfriend girlfriend relationships. On many occasions D has asked these young females to go to the movies, go away for a weekend, come on holiday with him or attend music concerts. There has been the occasional time when one of these young females has been able to participate in these experiences. It has been marvellous to see these young adults behaving like other young adults. Holding hands, eating a meal at a restaurant, swimming at the beach.

But in the majority of cases, when D has reached out to the young females, (who always express positive interest in spending leisure time with him), the parents have intervened with rather inadequate explanations.

‘Oh … oh no we are going away that weekend … sorry’ or ‘Xx is too busy on weekends, sorry she doesn’t have the time …’. When I have been with D when he has asked these young females, it is clear they want to engage in more leisure time with him. And yes, it is most likely if they continued with these extended leisure times, then intimacy would most likely occur.

We have tried to make contact with the parents and discuss these leisure options but it’s nearly always a closed shop. I understand contraception could be a concern, but there are many options in this area and it can be managed.

We are not sure how to address the issue. Surely these young adults have the right to engage in human relationships and derive the same benefits we have all received from being able to share in an intimate and loving relationship.

Ideas for making things better

A lot of people in the community don’t really understand what it’s like to live with disabilities.

Helping people in the community learn more about disability might make things better.

It is important that people with disabilities can make friends and have relationships, just like everyone else.

Carers and families

Not everyone who has disabilities needs a carer. But for those who do, families and unpaid carers provide most of the care.

Some of the things families and unpaid carers do include:

Provide a home

Take you to activities and outings

Find the right services and programs for you

Speak up for you

Stand up for your rights

Pay for things.

My daughter has a profound and complex disability. She needs specifically trained carers to help her eat, to go to the toilet and for communication. The services provider has not supplied this adequately—outsourcing rosters to other agencies as they cannot provide a worker, so consequently we do not get the specifically trained ones. This in real terms means my husband and I are obliged to take on these tasks. This means that often we have to cancel plans for a break, or short respite or a special event we had hoped to go to. I am required to pick up the tab every time the service provider falls short.

Many people told us about the deep love they feel for their family member who has disabilities.

But they also feel angry about some of the problems they have had with the service system.

These problems include:

Not getting enough help

Having to pay for services or support

Not enough respite.

I love my daughter. I want the same things for her as I want for my other children. I want her to have a good education, somewhere for her to live, meaningful work that she enjoys, a circle of family and friends who love her, someone for her to share her life with. But I lie awake at night worrying about how I can make all that happen. She is only eight, and I have already twisted myself into a pretzel trying to make sure she has all she needs. We pay for everything ourselves and we don’t get any government support. I can’t do it all alone.

Getting older

Some carers were concerned about what would happen to their adult son or daughter as they got older.

This can be bad when there is nowhere for the adult son or daughter to live.

One person wrote:

I sometimes feel so guilty because mum and dad have given their lives to support me and without much government funding. Over the years they have faced discrimination and not much support from our local community. I can’t remember when they had a holiday. People just do not understand. Now I see them getting older and I wonder what will happen to them and to me.

Disadvantaged groups

Some groups in the community have less opportunity than others. These groups might be disadvantaged because of their cultureor the country where they were born. Some of the submissions told us that there are people with disabilities who are also part of a disadvantaged group. These people face many challenges. They may have difficulty accessing information or services.

For families from different ethnic backgrounds, the issues are compounded. Many people from different ethnic backgrounds are not aware of their rights—to benefits, services, supports or respite. Due to the isolation felt by many carers and people with a disability from different ethnic backgrounds, language barriers or low levels of English proficiency still mean that these families do not access information and are unaware of what is available.

Indigenous Australians

The NDS [National Disability Strategy] as one of its first principles should acknowledge Aboriginal and Torres Strait Islanders as the original inhabitants of Australia and the custodians of the land. The Strategy should acknowledge the destruction of Aboriginal and Torres Strait Islander communities that occupation of Australia has produced. This destruction and the resulting dislocation and alienation is the primary contributor towards disability in Aboriginal communities. The NDS should commit to additional measures to support Indigenous people with a disability.

Some people with disabilities from an Aboriginal or Torres Straight Islander background may find it difficult to access services.

Some of the services do not take care of the individual needs of people from an Indigenous background.

For example, an Aboriginal man was told he had to move away from his friends and family. The man was a leader in his community. Moving away was very difficult for the man and everyone around him.

Non Aboriginal services do not understand the Aboriginal way of ‘shared care’ and the role that extended families play in supporting Aboriginal people with disabilities.

Women and disability

The submissions told us that many women with disabilities experience discrimination because they are women.

Many women with disabilities experiencedabuse.

Sometimes abuse happened in the places where the women were living.

Ideas for making things better

Here are some of the ideas people had to improve the lives of people with disabilities from disadvantaged groups:

Faculty of Education, Health and Science, Charles Darwin University Fairholme Disability Support Group Inc. (WA)
Family Advocacy
Family Planning NSW
Farrellys Lawyers
Federation of Ethnic Communities’ Councils of Australia
Fragrance and Chemical Sensitivity Support Group FRANS Inc.
Funktion – Making Life Fit

Nambour Aged Care Assessment Team – Queensland Government
National Association for Conductive Education SA
National Association of Childbirth Educators (SA)
National Council for Women (QLD)
National Council of Social Services
National Council on Intellectual Disability
National Disability Services
National Ethnic Disability Alliance
National Stroke Foundation (WA)
Northcott Disability Services
Novita Children’s Services Inc.
NovitaTech
NSW Association of the Deaf
NSW Consumer Advisory Group
NSW Council for Intellectual Disability
NSW Disability Discrimination Legal Centre Inc.
NSW Ombudsman
NT Council of Social Services

Real Living Options Association Inc.
Reinforce Inc.
RMIT University
Royal Australian and New Zealand College of Psychiatrists
Royal Children’s Hospital
Royal District Nursing Service (Victoria)
Royal Flying Doctor Service – National Office
Royal Rehab Aphasia Outpatient Group
Royal Society for the Blind
Royal Society for the Blind of SA Inc.
Royal South Australian Deaf Society Inc.
Ryde Area Supported Accommodation for Intellectually Disabled Inc.

Salubrious Productions
Samaritans Foundation School of Population Health – University of Melbourne
Scope Senses Foundation
Siblings Australia Inc.
Social and Community Services, Manningham Council, VIC
South Australian Taskforce on Multiple Chemical Sensitivity Southern Health
Southern Tasmanian Youth Transitions Taskforce
Southern Therapy Service
Spastic Centre
Speaking Up For You Inc.
Special Olympics Australia
Speech Pathology Australia
Spina Bifida and Hydrocephalus Association of SA Inc.
Spinal Injuries Association
SPLASH
St George Association
St Michaels Association
Strategic Policy and Research Program, Commission for Children and Young People and Child Guardians
Sunnyfield Independence
Sunshine Coast Independent Living Service Inc.

Tamworth Regional Council – Access Group
Tangentyere’s Aged and Community Services, Tangentyere Council Telecommunications and Disability Consumer Representation Toowoomba and District MS Support Group
Transport Victoria

UnitingCare Community Options Victoria
University of New South Wales
University of Queensland
University of Western Sydney

Waverley Industries Limited
Wellington Shire Council
West End Mental Health
Western Australia Local Government Association
Western Region Disability Network
Western Sydney Intellectual Disability Support Group
Westernport Speaking Out Inc.
Whitehorse City Council
Whittlesea District Adult Training and Support Services
Witmore Training and Support
Women with Disabilities Australia
Women’s Centre for Health Matters
Workable Living